Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 > 1). First Name, Last Initial -- H > 2). Where you live, City and State only. Las Vegas Nevada > 3). How many children you have & how many with RSS. Please include > ages, heights and weight especially for the children with RSS. I have three children, My daughter Emerald is five, she weighs 43 pounds, > > and I have no idea how tall she is, (but is tall for her age) my son Wyatt is > 4 and also 43 pounds, and is about half an inch taller than Emerald, so VERY > tall for his age. Xavier is 16 months old, has RSS (so far...still waiting > for the " official " dx...everyone keeps saying " suspected " or appears to have > RSS..) and is 16lbs, 27in (still!) > 4). Birth height, weight, premature and by how much. > Xavier weighed 6lbs 14oz and was 19 3/4 in long. This seems normal, except > when you figure in the fact that he was a week late. My daughter was 3 weeks > early and weighed in at 7lbs 14 oz and 21 in. and my son Wyatt was born 3 > weeks early as well and was 7lbs 6oz and 21.5 in long. > 5). Medication(s), feeding tube and how long they have been on it. Xavier is on Myrilax, has a G-tube since Feb 11th 2004, has had a fundoplacation, > and is on 27 cal formula. 140cc's by bolus 4X's a day, and then 55 > cc's every hour for 10 hours by pump at night. > 6). Doctor or hospital treating your RSS child(ren). This is really > useful for new members. He has been in Sunrise Children's Hospital here in Las Vegas, which is really the > only hospital here that can treat children. He is seen by Dr. Margo > Hendrikson, (Surgeon) Dr. Barron (GI) Dr. Kurt Piggott (Ped) Dr. > (Ophthalmology) Dr. Phil Christianson (Audiology) Dr. Billur Can-Moghaddam > (Genetics) Dr. Mayman (Cardiology) Dr. Myiloman (Neurology) and ST, OT, > and PT. > 7). when diagnosed. Hmm. That's a funny question. He was diagnosed by me. (At first) I heard about RSS and > started to research it when I found that he fit the > characteristics of an RSS child. When he got really sick, I took him to the hospital > armed with that knowledge. I went in and told them that they could admit him > for the immediate problem, (vomiting and dehydration) but that we would be > back the next day because it had been happening his whole life and there was > something wrong with my baby...he was 14 months old and weighed 12lbs. I > happened to get a really good resident, who had seen RSS kids before, and he made > sure that he had the whole workup, every specialist was called in to > evaluate him. It resulted in a 2 week hospital stay, many " arguments " over his > treatment, (mostly, me refusing to consent to unnecessary procedures and > demanding the proper ones..bruised a few ego's but hey, look at him now!) after a > while of pooh-poohing me, and seeing that what I was telling them was working, > the Drs. started to study the literature about RSS and agree that this was > what he had. > 8). Anything else you want to add. If not for this group, and the information that I found here, my son might not be > here today. He was that sick. I felt armed with the knowledge I > needed to go in and demand the proper care for my son even though the Drs. > didn't know what I was talking about, didn't think it would work, or that it was > not ordinary protocol for an " ordinary " patient. But, I had the information, > I persisted, and I knew that he would be okay...and he is! Jen Xavier 15months, 15lbs!, 27in RSS, G-tube, Fundoplacation, 27 cal Formula, Myrilax, ST, OT, PT, FT Emerald, 5, Non RSS Wyatt, 4, Non RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 > Hi everyone, > > Meribeth H Naperville, Illinois 3 children ages 8, 5 and 1. Only our 5 year old has RSS. He is 38 inches tall and weighs 29 pounds TJ was born at 32 weeks weighing 2 pounds and 13 inches long. Current meds - Reglan, Prevacid, Humatrope and Flovent. He has been tube fed for 2 1/2 years, currently has a GJ tube. Peptiman Jr. is the tube feeding formula. We see Dr. Harbison every 3 months at NY Presb. Hospital as well as a GI at University of Chicago Hospital. TJ was diagnosed at 1 1/2 years by Dr. H at the MAGIC Conference. > Meribeth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 My name is Jennie from Sebastian Florida. I have 3 children. Tim - 20 /Joe -10 and Lindsey is 7.9. she was diagnosed with RSS at 5. She is hopefully at least 43 pounds now. She lost weight and dropped down to 40 pounds recently. The Drs put her on Zyprexa and shes now eating like a horse. She has verbal and oral apraxia which makes her sound like shes 3 instead of almost 8, mild hypotonia,very loose jointed.sensory issues and devlopmentaly delayed. She has OCD,which she needs medicine for and ADHD ,the medicine makes her so calm now. I do have my doubts she is RSS,even with the diagnoses. I guess time will tell. She is 46 inches,and she looks just like me. I am 5'1 and her dad is 6'3 She was 5 Lbs 9 oz -and 18 1/4 full term. So she would very mild RSS I'm guessing:)) I think thats it! Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 1) Hillary J 2) Boulder, Colorado 3) 21, have RSS, 4'2 " (I went for my physical the other day and found out I was a whole inch taller than I previously thought...lol) 4) 2lbs., born at 28 weeks 5) No feeding tube, no growth hormone 7) diagnosed at 14 months at s Hopkins Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.